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“It Is Becoming A Struggle To Stay Alive”: Covid-19 Has Made It Worse For Thalassemia Patients


This post is a part of YKA’s dedicated coverage of the novel coronavirus outbreak and aims to present factual, reliable information. Read more.

I remember that during school days, we had Thalassemia NGOs come to our school, talk about their initiative and later we would get forms asking to collect donations. From every class, students who collected the highest amount would get certificates, medals, rewards etc. Among students, it was less about spreading awareness about the disease and more about who collects the highest. I believe this is where a lack of empathy started to surface.

Sheikh Aman Ahmad, a 38 y/o thalassemia patient from Jharkhand says, “I need a blood transfusion every 10-12 days, I’m finding it difficult to find a donor due to the pandemic. Not getting a donor is a big challenge.”

A 38 y/o thalassemia patient from Jharkhand shares how not getting a donor is a big challenge/ Representational image.

Most people are unaware of the fact that India is the ‘Thalassemia Capital’ of the world where more than 10,000 children are born with thalassemia major every year. Thalassemia is a blood related genetic disorder caused due to errors in genes, where the body doesn’t make enough of a protein called Hemoglobin, an important part of RBC.

Thalassemia is registered as one of the 21 disabilities in the Rights of Persons with Disabilities Act.

How Shortage Of Blood For Donation Is Leading To Deaths

In India, every year over 1 lakh patients lose their lives before they turn 20 primarily due to lack of access to healthcare facilities. Most patients are poverty-stricken, compelled to bear the brunt of the expenses of medicines, checkups, transportation, medical fee alongside the cost of blood transfusions every few days. The outbreak of Covid-19 aggravated their pre-existing challenges.

38 y/o Aman’s family’s monthly income is 17,000. His brother who was the sole breadwinner of the five-member family lost his job due to the lockdown. It costs Aman 6-7 thousand rupees every month to buy some more time to live.

According to an article by IndiaSpend in June 2018, India faced a shortage of 1.9 million units of blood. The situation worsened due to the pandemic. Currently, there are nearly 2 million Thalassemia major patients in India who are in dire need of blood. “My son died on my lap, right at the time I reached the gate of the blood bank,” says Gudiya Devi. Gudiya, 30, is one of those 270 million Indians living below the poverty line. She took several rounds of the blood bank for days.

“They told me that if I wanted blood, I had to bring my own donor or write to the Chief Medical Officer,” she added. Her 5 y/o son Vivek had thalassemia. He died in her arms when she reached the blood bank with the slip from the medical officer. Gudiya Devi lost her son due to inaccessibility of blood and inefficiency of the concerned authorities.

As the number of Covid-19 cases escalated, most hospitals were designated for Covid-19 and blood donations across the country ceased, posing a threat to life for thalassemia patients. Due to curb on movements, fear of getting infected and lack of awareness most donors refrained from donating, which consequently led to blood banks running out of supply.

“It is becoming a struggle to even stay alive,” says Sheikh Aman, a thalassemia patient who has developed hepatitis C due to unavailability of blood for transfusion. Soon after the onset of Covid-19, social media witnessed a flood of appeals/requests by patients and their families for the arrangement of blood and donors. Prior to the pandemic, Red Cross Society managed around 200 units of blood daily, which dropped down to 30-40 units in the lockdown. As per e-Rakht, the number of blood donation camps held across the country dropped to 98 by April 2020 against 606 in January 2020.

Financially sound patients somehow manage to fight this life-longe battle. It is the patients from BPL and low-income families who’re battling unarmed. Most patients living in rural India do not even have blood banks within 25 km radius; awareness about government schemes is a far fetched thing for them. In both the cases of Sheikh Aman and Gudiya Devi, they had to travel 50 and 30 kilometres respectively for checkup and transfusion.

a man covering his mouth with a hankerchief in his hand
Most patients living in rural India do not even have blood banks within 25 km radius/ Representational image.

Here’s How The Privileged Must Contribute

A lot needs to be done by both, government and the citizens. Physically and financially abled people must realise that it’s their moral responsibility to donate blood. People who can’t donate blood can sponsor a needy patient’s transfusion or medicine. There are numerous ways in which privileged people can contribute. Spreading awareness by sharing authentic information to uneducated patients about the disease or government scheme also counts.

Envisioning a healthy society just by expecting the government to launch schemes for thalassemia patients and not do our basic bit is a misapprehension. There are plenty of NGOs, blood banks, etc. looking for donors. All the information is just a click away.

Every year hundreds of Thalassemia patients like Vivek suffer and die, either due to unavailability of blood or lack of access to healthcare facilities. In the end, the reason does not matter. Life has been lost. Let’s pledge not to fail one more Vivek. Let’s realise our moral responsibility and contribute in whichever way feasible.

“It is the moral obligation of every person born in a safer room to open the door when someone in danger knocks.”- Dina Nayeri

Featured image is for representational purposes only.
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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

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Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

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MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

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A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform, demanding that the Government of Assam install
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